This blog explores my professional experiences and personal feelings as I have worked with people who are in the last chapter of their lives. I dedicate this blog to all of these people who have each taught me something new about life and about myself. The stories in this blog, however, are all fictionalized. Any resemblance to real life people and circumstances is purely coincidence.

Tuesday, May 31, 2005

About two days after I posted the reference to Prison Hospices, we admitted a forensic patient to our palliative care unit. This patient, unlike the one I described in that post, had not received a compassionate release. Instead, there were two guards sitting at the bedside at all times.

This man was not my patient, but I checked in on him while his nurse was at lunch.

There is no way this man could harm anyone, as he was essentially comatose. He was given a prognosis of one to two days to live. Having the guards at the bedside, however, definitely affected my experience with this patient. They altered the entire energy in the room. Instead of focusing my energy on bringing a calm, compassionate presence to the patient, their presence triggered my mind to wander off, wondering what this man had done that prevented him from being able to receive a compassionate release, minimally for these last 24 hours or so of his life.

There were no other visitors in the room. Unlike the family members whom I normally encounter in the rooms, these two adult men in uniform sat nearby, waiting for their shift to whittle away so they could go home. Professionally waiting, neither anxious for nor dreading when death would come. It seemed neither their responsibility nor of interest to them to inform me of changes with the patient.

I interacted with the sleeping patient, as I do with all others who are dying. I spoke to him, despite his unresponsiveness, explaining that I was bringing him pain medicine (his respirations had increased, suggesting discomfort).

As I turned to leave the room, I faced the guards once again. Their expressions were almost as lifeless as the patient's.

Sunday, May 29, 2005

As part of my Master's program, I am taking a course in Public Policy and Health. As you can probably guess I would, I seem to find ways to bring my interest in the end-of-life into all of my other classes. For this class, we had to present a public policy issue and argue either in favor or against it. I try to keep this blog as politically neutral as possible. Death and dying are relevant to everyone, therefore I would not want anyone to feel excluded by my personal political beliefs. That said, this is a hot debate and I found some interesting facts in the process of preparing this presentation. I welcome your thoughts and opinions - either in support or against physician assisted suicide.

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In the U.S., our society reinforces the notion that each individual has a right to die. This philosophy is supported by the existence of measures such as durable power of attorneys, living wills, and advanced directives.

In this regard, passive physician-assisted suicide is already legal in the U.S. It is legal to hasten the death of a person by altering some form of support and letting nature take its course. For example, by:

-Removing life support equipment, turning off a respirator or-Stopping medical procedures and medications or-Stopping food and water or-Not delivering CPR and allowing a person, whose heart has stopped, to die.

Who has the right to die?

As law now stands, when a competent patient with a terminal illness makes an informed decision to withdraw or refuse life-sustaining treatment, there is virtual unanimity in state law and in the medical profession that this wish should be respected (See reference).

Although patients can be hospitalized against their will on a 5150 for doing so, committing suicide or attempting to commit suicide is legal.

However, active physician-assisted suicide whereby a doctor provides a prescription for a lethal dose of a medication that the patient may take to terminate their own life is not legal in most states.

What does this mean for people whose illnesses will cause their health to decline excruciatingly slowly, causing prolonged suffering, possibly over a period of years? People who have no life-sustaining treatments to withhold?

One example I will use is a patient I had who had chronic obstructive pulmonary disease. At the point I met him, he reported that he was no longer able to engage in the activities that made life worthwhile for him due to the severity of his difficulty breathing. He admitted to me that he was contemplating suicide. Not having given much thought to physician-assisted suicide before, I followed the standard suicide protocol. I assessed that he did not have a plan in place. We made a contract that he would not try to kill himself while in the hospital, with the hopes that the treatments we provided would relieve his suffering enough that he might no longer wish to end his life. My approach made it clear that at that time, I did not believe that suicide was an acceptable option. Were the contract and the negotiation helpful or were they isolating him even further in his suffering? Might I personally want to die if I felt that I was slowly suffocating, breathing becoming more and more difficult over time?

Physician-assisted suicide has been legal in the state of Oregon for over seven years now. It has been legal in the Netherlands for over twenty years. It has been legal in Japan since 1962. It has been legal in Switzerland since 1941. It has been legal in Germany since the year 1751 (See reference).

Why might People Choose Suicide?

Let’s take a look at the statistics in Oregon for some answers:

Is it because they are not aware of other options?86% of patients who utilized physician-assisted suicide in Oregon over the past seven years were enrolled in hospice. In 2004, that percentage increased to 89%. Hospice is generally the best thing we have to offer people at the end of life. What other options are there?

Who is using physician assisted suicide? Is it the poor and disenfranchised, whom nay-sayers suggest?

Of the 208 patents who have utilized PAS in Oregon, 98% were white; 99% had insurance. Oregonians with a baccalaureate degree or higher were 8.3 times more likely to use physician-assisted suicide than those without a high school diploma.

What diseases are these people dying from?

Patients with ALS are by far the most likely to utilize physician assisted suicide.

The life expectancy with ALS is 2 to 5 years. During these two to five years, slowly progressing paralysis and muscle wasting occur.

My aunt had ALS. She had saved all of her prescription pills for many years before her diagnosis, perhaps having some premonition of what would come. Her diagnosis with ALS came after she went to the doctor because she was unable to swallow. Unfortunately, her first symptom took away the only option she saw for herself. Instead of being able to end her life before becoming debilitated, as she had planned, she rode out the following three years until she was able to move nothing more than her eyes. If she had the option to kill herself, her sister believes that she would have. And I would have supported her in making that decision.

Suicide has been decriminalized for many decades in most jurisdictions in North America (See reference).

Assisted death already occurs, albeit in secret. Keeping it illegal prevents open discussion between patients and physicians. Legalization of PAS would promote open discussion. It would assure patients that they would not be put in a hospital on a 5150 for even saying they’re contemplating suicide.

Although much of the opposition to physician assisted suicide has come from religious organizations, some religions have issued statements in support of physician assisted suicide including:

· The Unitarian-Universalist Association,· the United Church of Christ, · the Methodist Church on the US West coast, · The "Episcopalian (Anglican) Unitarian, · The Presbyterian church,· and the Quakers.

Tuesday, May 24, 2005

I first became aware of the particular needs of incarcerated people who are dying when I cared for a patient who had been given a compassionate release from prison so that he could die surrounded by his family. This patient was released after he was imminently dying.

Programs such as the Michael Unit hospice of the Texas Department of Criminal Justice provide services to inmates who have six months or less to live, therefore, many of them are not nearly as imminent as my patient had been.

Thanks, Alice, for the link! I hope others find it interesting as well. What a great service this unit is providing. I hope that other prisons will develop similar programs.

Thursday, May 19, 2005

Back in October, I started a discussion on whether or not to turn patients who are dying based on information I was researching on death rattle.

The question of turning still plagues me.

Personally, I always turn patients who are dying. For multiple reasons:

1. turning mobilizes secretions and prevents/decreases type I death rattle2. turning prevents bed sores from developing and/or worsening (bed sores, if they develop, are very painful)3. turning promotes physical contact and provides an opportunity for modeling touch for family members4. turning ensures I check in with the patient and the family at least every two hours5. opportunity to check for soiled linens (incontinence is common at the end of life)6. opportunity to check for fecal impaction (patients receiving opioids for pain are at highest risk for this)

Some colleagues have been concerned, reporting that when turning a patient who was close to death, the patient died.

If the patient is not turned over a period of several hours, atelectasis (a collapsing of part of the lung) will likely occur. If the lung collapses on one side and the patient is abruptly turned to the other side, the lungs may not have time to adjust to the change in hemodynamics (change in center of gravity) and consequently, the patient may stop breathing.

The way to prevent this?

1. Turn all patients, no matter how close to death you think they may be, every two to three hours. If you don't turn the patient for your entire 8 or 12 hour shift and the patient lives into the next shift, they may in fact die when the new nurse coming on turns them.

2. Turn slowly. Turning slowly allows the patient's lungs (and other organs) more time to adjust to the change in gravity.

If you have access to four pillows at home, I also recommend trying out the positions on yourself to find what is comfortable. This may help you when positioning immobile patients at work. One pillow generally goes between the knees, ensuring at least one ankle is floating above the mattress (can alternate the floating ankle with the next turn). This is to prevent a bedsore from developing on the bony areas of the ankle. One pillow goes behind the back. The patient does not need to be lying on their side; a small tilt is sufficient for our purposes. One pillow under the head (obviously). And one pillow to rest the patients hands on comfortably.

And always remember to get help when turning patients.

When I recently went to the doctor, complaining of a sore back, he answered, "You're a nurse, right? Isn't that redundant?"

Let's change that stereotype by asking our colleagues for help - for our sake and for our patient's sake.

Tuesday, May 17, 2005

I am surprised that after nearly a year of writing this blog, no one has asked me why I chose my profile photo and/or what it means.

I found this particular image of the compassion mantra, Om Mani Padme Hum, on the Dharma Haven site. Their site provides detailed information about the compassion mantra, including a link to an audio post that pronounces the mantra out for you. “The mantra originated in India; as it moved from India into Tibet, the pronunciation changed because some of the sounds in the Indian Sanskrit language were hard for Tibetans to pronounce.” In Tibetan, the mantra sounds like this:

“Ohm ma ney paid may hoom”

“Tibetan Buddhists believe that saying the mantra (prayer), Om Mani Padme Hum, out loud or silently to oneself, invokes the powerful benevolent attention and blessings of Chenrezig, the embodiment of compassion.”

According to Dharma Haven, viewing the mantra in written form is suppose to have the same effect as reciting the compassion mantra out loud. By using this stone representation of the compassion mantra, I am hoping to incite compassion – in myself as well as in my readers.

There is another reason I have chosen this stone for my profile.

Although Cicely Saunders, a nurse turned social worker, is credited with starting the modern hospice movement when she opened St. Christopher's Hospice in London, England in 1948; the Tibetan Book of the Dead was said to have been written in the late 8th century and was introduced to the West with Oxford's first edition in 1927. This Tibetan teaching text has contributed immensely to the study of death and dying and its practical application in hospices and other end-of-life care facilities.

I do not identify as Buddhist. I do, however, use the compassion mantra stone as an acknowledgement of respect and appreciation for the impact Tibetan Buddhism has had on the hospice movement.

Saturday, May 14, 2005

As my regular readers know, when my grandmother died in March, I adopted her cat. The cat is 21 years old. And upon our first visit to the vet, we learned that she has kidney failure.

Kitty generally seems to be enjoying life. She is more full of energy than either of my other two cats (both of whom are half her age).

We have tried making the recommendations provided by our veterinarians. First, we treated her for her ear and urinary tract infections (with antibiotic pills and ear drops that she hated). Then, we put her on a low-protein, low-phosphorous diet (which she also hates). Now they are asking us to inject her with fluids under her skin every other day. When I went to the vet's office to learn which fluids we would be using, how often I would be giving them, where to dispose of the needles, etc, they asked me to do a demonstration on the cat. I did not admit I was a nurse, not wanting to intimidate them, and honestly, not 100% certain of technique on a cat, as my patients are all human.

Afterwards, Kitty hid under a counter and behind a trashcan. She has *never* hid from me before. So, we can probably agree that she did not like having the fluids put under her skin.

Working in palliative care, I, of course, have to wonder. What would Kitty want? To eat whatever she wants and not get pills and needles and live for perhaps a few more months? Or would she want all these annoyances in order to be able to live for another year or two? (The vet actually did not give me a prognosis with and without treatment, but in the next visit I will ask for one).

My Sweetie and I are in disagreement. Sweetie wants all of the interventions. She says that the cat seems to have more energy after the fluids are given and thus has overall better quality of life. I'm not convinced.

Anyway... it's been an interesting dilemma to have been faced with in my home. And surprising that despite all Sweetie has learned about Palliative Care that she would disagree with me that all of the life-prolonging measures may give Kitty more quantity of life for substantially less quality of life.

My grandmother would definitely agree with me. Of course, she only took the cat to the vet to get her nails clipped (which I do more comfortably myself at home). Having a Christian Science background, my grandmother was definitely a minimalist when it came to medicine. But I don't necessarily want to totally do what my grandmother would have done. Because, ultimately, I want what is best for the cat.

Sweetie has recently realized that the decisions we are making are bigger than she'd first thought and is giving it some thought. I think we will end up trying a few of the fluid boluses at home and see whether or not Kitty tolerates them any better in a safer environment. And meanwhile, in the interest of giving her enough calories to survive on and some quality of life, I am sneaking Kitty some of her favorite treats that are no longer on her diet plan. ;-)

Tuesday, May 10, 2005

First of all, I apologize for the delay. My aunt's memorial was this past Sunday, causing the delay in my response.

I am not sure this post requires a second part to it. Everyone provided very valuable and key feedback as to what was wrong with this scenario. Together, you all offered the answers that I would have said. I am learning, too. I don't want to give the impression that I know the answers any more than you do either. These scenarios are truly about having a discussion.

That said...

The only thing I would add... If you suspect the patient may not want to know the prognosis... because their culture opposes using the word "death" or because the family insists the patient is not mentally stable enough to handle the news, you can start the conversation with a simple statement, such as:

"We have some very difficult decisions to make regarding your illness. Would you like me to be frank with you as to what we are seeing and what your options are or would you prefer another family member or designated person make those decisions for you?"

Like several of you suggested, this gives the patient the option of whether or not they want to know information such as prognosis.

And prognosis doesn't necessarily need to be stated that clearly. Because, to be honest, we can almost never give that precise of a timeline. At best, we can predict months to weeks, weeks to days, days to hours - in that terminology.

Thank you all for your participation in this discussion. I enjoy hearing your thoughts and hope you find the scenarios thought-provoking. And I always welcome questions - such as the clarification between diagnosis and prognosis. Excellent question, Jeremy.

Saturday, May 07, 2005

I'm bringing back one of my scenarios for your ethical debate. I will give my two cents after hearing yours.

During hospitalization, a 70-something man is diagnosed with a type of lung cancer with a very poor prognosis. Given the severity of the disease, it is unlikely he will live more than a year. The oncologist has to decide how to approach a treatment plan. The man and his family are having a hard time adjusting to the news of his life threatening illness and are not yet aware of its poor prognosis. Not wanting to take hope away from the family so soon, the doctor decides to treat the cancer with a low-dose chemotherapy. The chemotherapy is not the standard protocol for this type of cancer, but will have significantly less side effects than the standard protocol. The man's disease is so severe that neither type of chemo is likely to halt the progression of his disease.

Was this the best decision? Would it seem more or less humane to tell the man the truth - the severity of his disease, offer both types of chemo or no treatment and tell the man to enjoy the next 12 months that he has? Was taking this course of action more compassionate or unethical?

What do you think? What would you do if you were the doctor? What you want if this patient were you?

Wednesday, May 04, 2005

Based on the title of this post, you might be expecting some advice. I actually am primarily writing soliciting it.

Some of you may know that I recently spoke at a memorial service sponsored by my hospital for all of the patients who have died in the hospital's comfort care service. I had a lot of angst about speaking at that event. Representing all of my nurse colleagues seemed a daunting task. But the experience was incredibly meaningful.

Now I am thinking ahead to my great-aunt's memorial service this coming Sunday. What should I say? My grief seems to have paralyzed my brain. I had so much to say to the strangers (and a few family members whom I knew) at the hospital's memorial event. But now faced with my own personal loss, the words escape me.

I have sought out on-line suggestions via google.

The Memorial Service Location website has a nice compilation of poems and quotes that can be read at memorials, though the majority of them are somewhat religious. My great-aunt left her Catholic faith a long time before her death. And in our talks in the days prior to her death, she did not show any indication in a renewed interest in religion or even discussions of an after-life. So I am not sure any of these are appropriate for her in particular (though I would recommend that site to others who may be looking for things to read).

The eulogy tip sites all seem very focused on a plan for writing. I generally write more free-flow than that and so those suggestions haven't been very helpful either.

I think part of my resistance comes from not feeling emotionally ready to deal with her death yet.

Sunday, May 01, 2005

I just got news today that my great-aunt's memorial will take place next Sunday, on Mother's Day. I think I've been either in denial or keeping myself too busy to deal with my grief around her death. Thus I am feeling a bit overwhelmed by this news. I'd had all these plans after my aunt died:

1) write her children a letter telling them stories she'd told me about them and how much they meant to her

2) write up the story of her life - in the bits and pieces that she'd shared with me - to pass on to the rest of my relatives

But I have done none of this yet. The fact that her memorial is coming up has made it more obvious to me how absent I've been from my own grieving process around her death. But I suppose the time I gave myself to not think about it was needed to gain some strength back before facing it. I guess I can give myself that slack.